Here’s how to begin winning the PACE trial war

The media and medical professions are currently at war with chronically ill and disabled people. It’s a textbook example of the establishment systematically attacking people who it thinks can’t fight back, to deflect from its own disgraceful failings. But what it didn’t expect was the so-called ‘Millions Missing’. And now, it’s time to start winning this war.

Three articles. One story.

As I previously wrote, there is currently a coordinated media war against chronically ill and disabled people who live with myalgic encephalomyelitis (ME, ME/CFS, chronic fatigue syndrome). This is because of patients and supporters’ objections to PACE trial – a study which defined treatment for them.

Firstly, I wanted to put the three articles I have written about this in one place. I hope they provide some useful commentary on the issue, and give people living with ME and their advocates some much needed support.

Article one is about how the media war is being waged:

https://mrtopple.com/2019/03/18/the-media-is-waging-a-coordinated-war-against-chronically-ill-and-disabled-people/

Article two is about one of the reasons why it is:

https://mrtopple.com/2019/03/18/the-twisted-reason-the-media-have-waged-war-on-chronically-ill-and-disabled-people/

Article three is the ‘what’ – what impact PACE trial and its proponents have had, and are having, on people living with ME – some of which I rarely see discussed:

https://mrtopple.com/2019/03/18/dont-be-fooled-pace-trial-was-an-abusive-war-on-chronically-ill-and-disabled-people/

But I also wanted to give mine and Nicola’s thoughts on how we, the ME community and the people involved, move forward.

Don’t let those who would seek to destroy you, beat you:

You are already fighting a disease of catastrophic proportions. We know how hard this is. But the likes of Michael Sharpe and the media? Anything they throw at you pales in comparison to the ravaging impact of ME. You are far, far stronger than them – even if you feel you’re not.

Beware ‘false prophets’ and ‘Trojan Zebras’:

There are going to be journalists and advocates come along, writing about ME and supporting you, who are not doing it for the right reasons. Or they will be compromised and won’t really understand why. But they’ll make out that they’re being fully supportive and really understand what’s going on.

Don’t be fooled. In the same way these people and the outlets they write for are ‘controlled political opposition’, they are controlled opposition against PACE trial.

“Ye shall know them by their fruits”. They’ll probably come with a Guardian logo. But I’ll write more on this separately.

Get clued up:

The research and evidence that blows the fraudulent nature of PACE trial is out there. If you can get your head around it – great. If it’s too much, always have the links handy, maybe saved in a “favourites” folder on your browser. This means you’re ready to drop them anytime, as evidence. The more people putting this out there, the more people will know about it.

Also bear in mind: the current media war probably has a lot to do with the review of the NICE guidelines on ME. If they can solidify now the view that anyone opposed to PACE trial is a ‘abusive’, ‘militant’ ‘activist’, when it comes to the review these opinions will be null and void. Therefore, NICE will be able to keep CBT and GET as recognised treatments.

Use the “ten commandments”:

These are from a lady called Sylvia Waites (a patient of Dr Sarah Myhill’s). Me and Nic know some of them are not practical if you’re time or financially poor, but some of them are on the money:

Thou shalt not be perfect or try to be.
Thou shalt not try to be all things to all people.
Thou shalt leave things undone that ought to be done.
Thou shalt not spread thyself too thin.
Thou shalt learn to say “NO”.
Thou shalt schedule time for thyself, and for thy supporting network.
Thou shalt switch off and do nothing regularly.
Thou shalt be boring, untidy, inelegant and unattractive at times.
Thou shalt not even feel guilty.
Thou shalt not be thine own worst enemy, but thine own best friend.

You’ll be in a far better position to challenge PACE trial and its proponents.

Support each other:

Divide and conquer is a classic tactic of the ‘establishment’, which is ultimately running the show with PACE trial. You see it in every social and political movement in history. They want us to argue amongst ourselves, as it makes us easier to pick off. Don’t do it. We may have our differences. We may all be from different backgrounds. But that’s what ME is like, no? It doesn’t care how rich or poor you are. Nor does it hurt every person in the same way. It’s still the common enemy, though. So we all need to be the common ‘resistance’.

We need to organise across campaigns. Now:

As I wrote in article two, the implications of PACE trial stretch beyond ME. But moreover, chronically ill, sick and disabled people all have a common enemy: it’s the system and its gatekeepers which leave you marginalised; without the support you need; subject to abuse from others, and often at the bottom of society.

Whether it be ME, Ehlers-Danlos syndromes, MS, mental distress – if the system worked in our best interests, you wouldn’t have to be campaigning in the first place.

So, to that end, is it not time that all campaign groups, people and advocates started to co-work, across impairments and illnesses, towards a common goal? One which puts in place the building blocks for a society we all want to see?

Check out Nic’s tweeting on #Zebras and Jen Brea’s #Nightingales. Also check out Dr Emma Reinhold‘s work. These are the starting points.

Merging our experience, stories and talents would make us unstoppable. I truly believe it. And I truly believe in all of you.

You don’t let this disease beat you. So why let a bunch of arrogant medical professionals and the complicit media?

We can do this. I promise you.

Thanks for reading x

I am no longer writing for The Canary, due to my partner’s chronic illness. You can read about that here. But if you like my work any gifts/donations to keep it going are gratefully accepted below. Thank you.
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6 comments

  1. Liz W · March 19

    Even though this shouldn’t be party political, I do hope the left wing gets behind ME and other MUS/LTC patients and helps expose this injustice. There are lots of groups who are being harmed by this agenda and some are already working towards the common goal. Can we do really do this? I don’t know, but we can have a damn good try.

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  2. David knox · March 19

    I’ve had ME for 30 years and seen it all . Resistance to new ideas is often at its strongest when in its death throes . I do find the biomedical research in the states a cause for hope as it has surely fallen down a rabbit hole in the uk

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  3. Liz W · 30 Days Ago

    Steve wrote:
    “They want us to argue amongst ourselves, as it makes us easier to pick off. Don’t do it. We may all be from different backgrounds. But that’s what ME is like, no? It doesn’t care how rich or poor you are. Nor does it hurt every person in the same way. It’s still the common enemy, though. So we all need to be the common ‘resistance’.”

    I completely agree. But on S4ME I have read some comments about Steve’s involvement that don’t seem very inclusive. It would be a crying shame if ME sufferers/advocates don’t engage with what Steve is trying to do here. He and his partner may have life experiences that some of us don’t share and we should listen to and appreciate other people’s perspectives. His politics should not be a reason to push him to the fringes.

    Like it or not there ARE political aspects to the ME/MUS agenda that cannot be ignored. The Health and Social Care Act (2012) allowed the transfer of NHS work to ‘arm’s length’ or ‘executive non-departmental public bodies’ (ENDPBs), and, as much as ministers would like to distance themselves from what goes on in them, for as long as these bodies are funded with taxpayers’ money then we must hold Government ministers to account for what they do. One such ENDPB is NHS Digital that since Spring 2017 has been telling IAPT services to apply the ICD-10 F45.0 somatization disorder code to all IAPT MUS patients, including those with ME/CFS. The current Government knows about this issue and has done nothing. It may be that psychiatrists somehow convinced them that this was the right thing to do, or it may be that successive governments have enlisted psychiatrists to find a way to exclude sick people from biomedical care. Believe what you will, but IMO the current Government must be held to account for this.

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  4. Liz W · 29 Days Ago

    I should have explained that the coding issue is particularly important because, since the time that IAPT started applying the ICD-10 F45.0 code to all ME/CFS (and MUS) patients on its programme, a Government minister has repeatedly attested that the Government accepts the WHO’s classification of ME/CFS as a neurological condition with the ICD code G93.3 in the category of ‘diseases of the nervous system’. But the IAPT programme has seemingly been allowed to continue coding all IAPT ME/CFS patients with the F45.0 ‘mental and behavioural disorders’ code instead, and the Department of Health and Social Care should have been fully aware of this coding, having been in receipt of the monthly documents from NHS Digital that show that this is going on.

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